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Patient Engagement in Data Research Initiative (PEDRI ) Good Practice Standards

We are deeply committed to upholding the highest standards of practice in our work. The PEDRI Good Practice Standards are fundamental to our approach, guiding our actions, decisions, and interactions to ensure excellence, integrity, and continuous improvement.

The PEDRI good practice standards address key barriers to effective public engagement. They are built on two years of collaboration with the public and professionals.

Our PPIE lead was funded by the North West Secure Data Environment programme to join the PEDRI working group and help finalise the public co-created values framework

What are the standards

Equity, Diversity, and Inclusion (EDI) refers to the fair and balanced inclusion of people with different backgrounds, experiences, and identities in research projects or initiatives involving data about people and communities. This standard supports an environment where anyone, including underrepresented and underserved groups, can participate in public involvement and engagement activities and inform change.

This could be achieved by:

  • Adopting a jargon-free, flexible, and creative approach to talking about data, to help ensure anyone can participate without being excluded by methods used or inaccessible information.
  • Developing targeted and adaptable public involvement and engagement plans, which incorporate equality impact assessments and follow relevant guidance to address the specific needs of different people, groups or communities.
  • Collaborating with a variety of groups and organisations to build and maintain relationships with underrepresented and underserved communities, ensuring their voices are heard.
  • Seeking contributions from a broad range of public members, including those who may be unfamiliar or have questions or concerns about the topic at hand.
  • Celebrating and embracing the unique skills, knowledge, and real-world experiences that members of the public bring.
  • Reimbursing costs associated with taking part in public involvement and engagement activities to help ensure everyone has access to the tools, support, and opportunities to participate.
  • Working with others to find solutions to funding challenges or areas where there is a lack of EDI knowledge.

The ability to read, understand, and communicate data—known as data literacy—empowers people to engage in data research and statistics, which can often be complex and challenging to navigate. By embedding training in public involvement and engagement activities, it is possible to better understand the unique aspects of research projects or initiatives involving data about people and communities, contributing to a more informed and inclusive community.

This could be achieved by:

  • Exploring what public members already know and what they wish to learn about the topic at hand, while managing expectations.
  • Personally seeking data training and offering it to public members, ensuring that these opportunities are tailored to individual needs and the specific context of the research project or initiative.
  • Defining commonly used terms, such as anonymisation, de-identification, data access processes, and privacy safeguards, to support public participation in conversations about data.
  • Ensuring public members have the time and support necessary to build their confidence in understanding data, where needed.
  • Providing real-world examples in discussions with the public about data to make them more relatable.
  • Sharing any training materials developed for public involvement and engagement activities widely, so that they are available and accessible to all those interested.

Data research and statistics often includes complex terms and abstract information. As such, two-way communication is essential to promote an active exchange of information between parties, allowing both to share and receive insights. This approach can help all parties to better understand each other’s views and contribute effectively to the conversation.

This could be achieved by:

  • Increasing awareness of how data is used in people’s daily lives.
  • Ensuring conversations are engaging, culturally sensitive, and relatable for members of the public from all educational backgrounds.
  • Listening, acknowledging, and responding to public views and concerns, demonstrating their opinions are valued.
  • Investigating communication preferences of various audiences to meet diverse needs, including non-native English speakers, neurodivergent people, or people living with disabilities.
  • Using jargon-free language, limiting or avoiding the use of abbreviations where possible, and unpacking abstract information by co-creating summaries and glossaries.
  • Increasing accessibility by using a range of channels of communication and formats, such as large print documents, videos, images, and diagrams, to invite feedback and ensure clarity.
  • Being mindful of reading age when developing materials for public involvement and engagement activities, encouraging understanding and open dialogue.
  • Acknowledging the barrier of digital exclusion, seeking ways to overcome it where possible.
  • Anticipating the likelihood of uncomfortable conversations and planning for trained facilitators to address them, or to signpost to relevant information and support.
  • Providing varied opportunities for the open and constructive exchange of views and ideas.
  • Recognising that consensus may not always be possible but ensuring that all perspectives are heard and considered.

Transparency refers to an approach to Public Involvement and Engagement that involves making information freely available and easily accessible while fostering a safe space for open and honest conversations with the public. This approach can help create an inclusive environment, allowing all parties to contribute comfortably and effectively to discussions.

This could be achieved by:

  • Being open and clear throughout the research project or initiative, including the public in decision-making around planning, partnerships, access to data, public involvement and engagement activities, budget, and timelines.
  • Clarifying the purpose of public involvement and engagement activities activities at all times, highlighting the value and purpose of public participation.
  • Encouraging a dialogue that meets public expectations for transparency, allowing enough time for questions and answers.
  • Providing up-to-date research materials in accessible formats, including summaries and user-friendly channels of communication.
  • Ensuring timely follow-up with people involved in public involvement and engagement activities activities to share their impact and outline the next steps.
  • Sharing all outcomes of the research project or initiative (including successes and lessons learned) with those involved in public involvement and engagement activities activities.
  • Recognising public members’ contributions and inviting them to assist in broader communication of information where possible.

To maximise the benefits of public involvement and engagement activities, it is important to adopt an ongoing, dialogue-based approach that encourages benefits for all parties involved, including public members, professionals, and the wider population. This approach can help achieve valuable insights and ideas that generate impactful research informed by public views.

This could be achieved by:

  • Explaining to public members why they have been invited to participate in public involvement and engagement activities.
  • Highlighting the broader benefits of the research project or initiative and clarifying what the public would gain by participating and contributing to public involvement and engagement activities.
  • Setting realistic expectations for public involvement and engagement together, agreeing on ways of working, and preparing to navigate any disagreements that may arise.
  • Acknowledging the contributions of public members by offering payments and or other agreed forms of appreciation.
  • Ensuring ongoing evaluation of the public involvement and engagement impact on all parties involved, while providing updates on any changes made and the rationale behind them.
  • Promoting knowledge exchange among all parties involved, ensuring that dialogue is driven by active listening and responsive behaviour.

Public involvement and engagement practices should be led by clear objectives, purpose, outcomes, and a strategy for integrating public input into the project. What constitutes ‘effective’ public involvement and engagement may vary depending on the specific context of involvement and engagement, but it ultimately rests on the genuine intention for collaboration. This approach can help ensure that public involvement and engagement plans and the projects they support are informed by and shaped through public input.

This could be achieved by:

  • Collaboratively developing public involvement and engagement plans, using shared decision-making approaches, such as co-creation, co-development, and co-production.
  • Setting realistic objectives for public involvement and engagement activities, including how public input will be integrated into the relevant projects.
  • Creating an environment where everyone feels able to contribute throughout the project.
  • Continually monitoring public involvement and engagement progress and public’s needs, making necessary adjustments based on real-time feedback.
  • Ensuring adequate time and budget is allocated to public involvement and engagement activities, as insufficient resources can limit the achievements of desired results.
  • Evaluating the impact of public involvement and engagement activities by agreeing on indicators of success and clarifying the characteristics that make public involvement and engagement effective in each specific context.
  • Capturing lessons learned and sharing strategies for promoting positive change.

Creating a culture of involvement and engagement in an organisation means embedding public involvement and engagement at every level, ensuring adequate resources and ongoing support while also encouraging an environment where public members’ contributions are valued and integrated throughout research projects or initiatives. This approach can support a seamless partnership between the data research community, public involvement and engagement professionals, and the public.

This could be achieved by:

  • Championing public involvement and engagement at all organisational levels, recognising the added value of public members’ contributions to strategic thinking and forward planning.
  • Promoting senior leaders’ accountability and commitment to adequately resource public involvement and engagement, ensuring they actively support and take responsibility for the success of public involvement and engagement efforts.
  • Resourcing public involvement and engagement throughout the entirety of a research project or initiative, ensuring adequate funding, staff, training, and other relevant resources that are necessary to align to good practice standards.
  • Promoting the value of public involvement and engagement across the data research and statistics community to ensure outcomes remain relevant and can be implemented in real-world contexts.
  • Offering ongoing and updated public involvement and engagement training extended to the wider data research and statistics community, beyond just public involvement and engagement professionals.
  • Embedding public involvement and engagement throughout any research project or initiative, while being mindful of the differences across the four nations, and always prioritising public benefit.
  • Sharing and exchanging knowledge on good practices, especially with those new to public involvement and engagement.
  • Continually improving approaches to public involvement and engagement, including evaluation methods and evidence of impact.

Find out more about the Patient Engagement Data Research Initiative (PEDRI) on their website.

The Power of Strategy and Joined-Up Thinking in Public Involvement

To make real change, public involvement must be planned, connected, and built on shared values. It’s not just about asking people what they think—it’s about working together to shape policies, services, and decisions that improve lives.

For this to happen, we need a clear strategy. Public voices must be heard at every level, from local communities to senior leaders. This means bringing together the public, professionals, researchers, and decision-makers in a way that builds trust and leads to action.

Four key things make this work:

  1. Shared Values and Trust – People engage when they feel listened to. Honest communication, fairness, and transparency help build trust. Organisations must show they take public input seriously.
  2. Clear Structures and Processes – Involvement should be built into how organisations work, not added as an afterthought. Good governance, feedback, and co-production make sure engagement leads to real improvements.
  3. Supporting People to Take Part – Engagement only works when people feel able to join in. Training, clear information, and support help make involvement meaningful and fair for everyone.
  4. Real Impact Across the System – The goal is not just better engagement—it’s better health, wellbeing, and services. We must show how public involvement leads to real improvements in policies and outcomes.

When values, strategy, and collaboration come together, public involvement becomes a powerful force for change.

Below is an infographic representing this joined-up thinking. Who, why, what and how.

The Power of Strategy and Joined-Up Thinking in Public Involvement Creating a culture of meaningful public involvement and engagement requires more than good intentions—it demands a strategic, joined-up approach that blends values, organisational theory, human factors, and collaboration. To make real and lasting impact, we must recognise that public engagement is not just about consultation; it is about embedding shared values into systems, structures, and decision-making processes. At the heart of this approach is the need to bring people closer together—connecting members of the public, professionals, researchers, and decision-makers through effective communication. When these groups work in harmony, they create an ecosystem of trust, transparency, and accountability, ensuring that public voices shape the policies and services that affect them. This strategy is built on four fundamental principles: Values and Trust – Public involvement must be rooted in shared values. Trust is built when organisations commit to meaningful engagement, ensure equity, diversity, and inclusion, and remain transparent and accountable. By using public values as a foundation, we create systems that promote better health, wellness, and prosperity for all. Organisational Theory in Action – A well-structured approach ensures that public involvement is not fragmented but embedded across all levels of an organisation. Good governance, co-production, and continuous feedback loops transform public engagement from a one-off activity into a systemic, ongoing process that leads to measurable improvements. Human Factors and Collaboration – People are at the heart of any system. Engagement is effective when we consider the human factors that influence participation, such as data literacy, accessibility, and empowerment. When organisations support communities through training, co-production, and partnership working, they create an environment where public voices become part of collective action. Integrated Strategy for System-Wide Impact – Public engagement should not exist in silos. A truly joined-up approach ensures that engagement leads to real change across the entire system—from shaping policies and tackling health inequalities to strengthening decision-making and accountability. Impact must be seen not just in engagement itself, but in health outcomes, wellbeing, and social progress. Through this integrated continuous improvement model, organisations can move beyond ‘tick-box’ engagement and create a culture where public involvement drives meaningful, lasting change. When values, organisational systems, human factors, and collaboration align, we achieve not only common goals but also demonstrate the common values that underpin a fair, inclusive, and effective society.